This is a guest post from the Ketchikan Wellness Coalition and Melissa O’Bryan.
Ask any parent of a child with a disability and they will all agree they have heard at least once “I don’t know how you do it.” It is a very well-meaning phrase, but it comes with a set of implications, that we were given a choice or even that there is an alternative.
Parenting a child with special needs comes with a lot of false bravado. A fake it till you make it if you will. We are needed to be on call 24 hours a day, 7 days a week, 365 days a year. I am my child’s biggest advocate in all areas of life, as I should be. But it can be exhausting. I am his voice at school, when I’m trying to make sure that he gets services, that he is included and that he is safe. I am his voice in the community, when I’m trying to teach the world around him to be kind, when it can be so easy to ignore people with disabilities. And I have learned to find my voice in the medical community, where I have learned that while I appreciate and am grateful for every bit of knowledge our team provides, I also know that doctors are practicing medicine and I know my child best.
False bravado. As a parent of a child with a disability, there is little time for self-care, for self-doubt, and often little time for yourself at all. I know for myself, I used to worry it would be seen as selfish to put myself on the list. For some parents, the guilt that we feel when we do take time for ourselves, can often make it unenjoyable. Yet, it is so important to remind ourselves that we can’t fill from an empty cup. We can’t care for others if we aren’t properly caring for ourselves.
I have my own behavioral health struggles that have been exacerbated by my son’s disability and what it takes to be the best mom I can be to him. But there in itself lies another struggle. I have four children. How do I parent all of my children equally when one of them requires so much more from me? It can be exhausting comparing myself to other moms. I am a positive person by nature. A people pleaser. In a previous life, I was a Pinterest mom. I made the theme snacks, and often volunteered for everything. Now I’m learning that I can say no and without guilt.
One of the hardest things about parenting a child with a disability is feeling that you are alone, or that nobody understands, or worse, that nobody wants to hear about it. I can’t count how many times I’ve been asked how I’m doing or how my child is doing when I have wanted to answer honestly and didn’t. To let them know that in this week alone, we flew to Seattle for medical appointments in one day, spent a significant chunk of time in the ER or with medics due to our needs, filled six prescriptions at two different pharmacies, dealt with insurance denials and trying to find specialists and then missed my son’s game. What I can count instead is the number of times I said “great!”. False bravado.
I spent a lot of time in anger over our life. Everything changed for us and yet the world kept moving. We were falling apart on the inside, but on the outside, holding it all together. I had to allow myself to grieve and to go through the process of letting go the idea of what our life should have been and in that I allowed myself to accept our life for exactly what it was at that given moment.
I have learned to seek out help from others with similar stories and I have learned that there is no shame in sharing ours. I found the biggest support system in a group on Facebook of moms whose child had the same diagnosis as mine. All of a sudden, the worries and fears I had were not ones I shared alone. I found strength in their stories and their successes and it gave me the strength to step outside of my comfort zone as well.
I am hoping other parents and caregivers of children with disabilities feel the strength to ask for help. I am hopeful that they will find a support system when they need it most, to help them be the best parent, advocate and person that they can be.
If you are a parent or caregiver of a child with a disability, there is a new Caregiver/Parent support group at SAIL. We meet the first and third Wednesday of the month at 5:30. All are welcome, it is confidential and there is no judgment. It is simply a place for us to recharge, in a safe space. And there’s coffee…. 🙂
Healthy Minds is a monthly column coordinated by Ketchikan Wellness Coalition as a way to share positive stories from people living with mental illness, offer information from local mental health professionals about maintaining mental health in your life, and provide details on tangible activities or actions you can take to strengthen your mental wellness. If you would like to contribute to the column, please contact Romanda Simpson at firstname.lastname@example.org